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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 4:00am
I do want to add one more insight that I believe is a big part of the picture.  Diet and exercise.  I was diagnosed on 12/17/17 a 1.6 cm tumor clear margins and lumpectomy.  AC x 4 and 12 taxol and finally 16 rads with an additional 4 power blasts.  I was treated at Sloan in NYC.  Went through everything beautifully and am most thankful for my team of doctors, nurses and my family.
I have read a lot and have adopted an intermittent fasting regimen a long with daily High intensity training. I think lifestyle changes are another part of the equation.  At the end of the day…all of my lifestyle changes may not make a difference in my survival outcome. BUT, I feel like I am doing something to help my effort and I feel great!
Lastly, today I ran into one of the woman I helped get through her diagnosis and she confided in me she sometimes still gets down in the dumps and asked me if I do…and I said yes I do.  I especially get down after a great family occasion thinking what happens if I am gone and miss all of this.  I will never discount the highs and lows of any cancer diagnosis…but my oncologist once said go with it and then reset your clock and move on.  I move on by getting busy!  I clean a closet, garden or take on a new task at work. So, while keeping our bodies busy with new diet and exercise…don’t forget about keeping our minds busy too.  I think we have a whole body approach to this thing and once again my opinion.
In closing, it would be nice to start a thread for thrivers to add what lifestyle changes they have adopted to help them.
Godspeed to us all!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2021 at 3:28am
Steve,
Thank you…well said!  You helped me as I enter year four.  Both you and Donna…I love your informative posts that are always helpful and rooted in knowledge and hope.
All the science, all the technology and mix it in with hope, prayers and faith and we may have a new treatment on the horizon called - positive power infusion!  Single daily dose, self administered!  No co-pays and all insurance accepted!
I respect all the opinions and learn from both sides…but at the end of the day I am still very thankful for this site.  It has been a mentor and a friend to me through my cancer journey.
Godspeed to all here!
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Dear Mountain View,

written with xo back at you..my responses in caps below-

We should all be able to share our opinions without judgement. 

YOU ARE ABSOLUTELY CORRECT THAT WE SHOULD BE ABLE TO SHARE OUR OPINIONS BUT THE
WITHOUT JUDGEMENT PART IS DIFFICULT BECAUSE YOU HAVE MADE CERTAIN STATEMENTS THAT CAN BE HARMFUL TO THE WOMEN HERE., IN MY OPINION

I don't need scientific studies to know that chemo does not help all those with TNBC and to say it does is not fair either.

NO ONE THAT I KNOW OF HAS SAID THAT CHEMO HELPS EVERYONE WITH TNBC. WHAT I WILL SAY IS THAT AT TIMES TNBC IS VERY SENSITIVE TO CHEMOTHERAPY AND AT TIMES IT IS NOT. MY DAUGHTER HAD ACT 17 YEARS AGO AND SHE HAS NO EVIDENCE OF DISEASE TODAY AND SHE IS HEALTHY. SHE ALSO HAD EXTENSIVE SURGERY.

I personally know 4 people with TN that chemo did not help at all in fact it made things worse and some have already passed away. Now I am watching another friend going through the same thing and she is on her final days.   I am not going to get into any disagreements or arguments with you. 

I HAVE KNOWN AT LEAST 100 WOMEN WHOSE TNBC WAS CHEMO-RESISTANT. I DEFINE CHEMO-RESISTANT AS A TRAGIC EVENT WHERE THEIR CANCER RECURRED WITHIN 3-5 YEARS WITH AWFUL CONSEQUENCES AT TIMES. OR AT TIMES NEVER REGRESSED FROM THE TIME THEY WERE DIAGNOSED. I HAVE ALSO SEEN RECURRENCES AND A NEW COURSE OF TREATMENT HELP THEM TO LIVE SEVERAL YEARS TO AT TIMES 10 OR EVEN 15 YEARS. 

MY HEART ACHES FOR THOSE WOMEN WHO PASSED AWAY AND LEFT GRIEVING FAMILIES AND PARTNERS.

I know there are more than 4 subtypes but they seem to at least acknowledge 4. 

ACCORDING TO CHUCK PEROU WHO IS ONE OF THE LEADING RESEARCHERS IN THE U.S. STUDYING TNBC/SUBTYPES THERE  SEEM TO BE AT LEAST 6-7 TYPES OF TNBC SUBTYPES. 

I know my subtype and I know chemo does not work for my subtype. 

THAT MAY BE TRUE, UNFORTUNATELY, AND I AM GENUINELY SORRY THAT IS THE CASE FOR YOU. I KNOW YOU ARE STRUGGLING AND ANGRY; UNDERSTANDABLY SO.

The doctors need to stop treating this like it's all one disease because it's not. 

THE CORE PROBLEM ACCORDING TO MOST OF THE RESEARCHERS AND ONCOLOGISTS I HAVE TALKED TO HAVE TOLD ME THAT EVEN THOUGH THE VARIOUS SUBTYPES ARE KNOWN, IN MANY CASES, THEY HAVE NOT FOUND AN EFFECTIVE TREATMENT FOR THAT SUBTYPE BUT THE RESEARCH CONTINUES AND THAT GIVES ME HOPE. THE DOCTORS ARE DOING THEIR BEST WITH THE WEAPONS THEY HAVE AND AS YOU MAY HAVE SEEN THERE HAVE BEEN STUDIES INDICATING THAT KEYTRUDA + CHEMO MAY BE EFFECTIVE WITH SOME TNBCs.  I POSTED ON THIS TODAY AS DID DONNA MONTHS AGO.

I ALSO BELIEVE THAT THE GOAL SHOULD BE THAT MORE RESEARCH NEEDS TO BE DONE TO TARGET THE VARIOUS SUBTYPES MORE EFFECTIVELY. FRUSTRATINGLY TNBC NEEDS MORE RESEARCH TO BE DONE AS DOES INFLAMMATORY BREAST CANCER. HARD TO ATTRACT RESEARCH DOLLARS WHEN THEY ARE BOTH SO RARE. THE TNBC FOUNDATION HAS BEEN TRYING THEIR BEST TO SUPPORT TNBC RESEARCH. 

Chemo is standard protocol because they have nothing else to offer.  I met with some top doctors at top cancer hospitals and the answer is always it's protocol.

MANY ONCOLOGISTS ARE BOUND BY THEIR INSTITUTIONS INSISTING THAT ONLY FDA APPROVED PROTOCOLS CAN BE USED SO THAT IS WHAT THEY CAN PRESCRIBE. BUT, IT IS ALSO TRUE THAT CURRENT CHEMO TREATMENTS, NOT AS OFTEN AS WE WOULD LIKE, HAVE GIVEN WOMEN WITH THBC A LONGER LIFE. 

I AM ALSO PRAYING THAT THE RECENTLY APPROVED TRODELVY (SACITUZUMAB) CAN HELP OUR COMMUNITY. 
SO FAR, I HAVE SEEN IT HELP SOME AND NOT HELPED OTHERS BUT I AM ENCOURAGED THAT SOME FOLKS WERE HELPED.

Anyway I would just like women to stop being scared and bullied into making decisions. 

I HAVE HELPED OVER 1000 WOMEN WITH TNBC IN THE LAST 17 YEARS AND I HAVE SEEN MANY SCARED WOMEN, UNDERSTANDABLY SO, BUT HAVEN'T SEEN THEM BEING 'BULLIED' INTO MAKING DECISIONS. IF ANY OF THE WOMEN WERE 'BULLIED' I WOULD NEVER REFER THEM TO THAT ONCOLOGIST AGAIN. IF YOU MEAN THE ONCOLOGISTS HAVE SCARED THE WOMEN I DON'T THINK IT WAS DONE WITH MALICIOUS INTENT, RATHER AN ASSESSMENT THAT TNBC CAN BE TOUGH TO TREAT WITH A LIMITED ARSENAL OF WEAPONS AND THAT IS SCARY..

Again, chemo works for some and others it does not. 

THAT IS ABSOLUTELY TRUE.
 
I have another friend with TN that declined chemo after watching her aunt pass away from it.  She is a 9 year survivor without any chemo. 

THE EXPERIENCE YOUR FRIEND HAD OF DECLINING CHEMO AND LIVING FOR NINE YEARS IS TRULY REMARKABLE. I AM DELIGHTED SHE DID. I HAVE HELPED A HALF DOZEN TNBC WOMEN WHO DECLINED CHEMO FOR A VARIETY OF REASONS-SEVERAL WENT TO TIJUANA FOR A SPECIAL DIET, HERBAL MEDICINES AND OTHER ALTERNATIVE TREATMENT AND TWO WOMEN DID NOT DO TREATMENT BECAUSE THEY REFUSED TO LOSE THEIR HAIR. THEY ALL PASSED AWAY BETWEEN 12-24 MONTHS. AND WHAT UPSETS ME WHEN YOU WRITE ABOUT YOUR FRIEND WHO HAS LIVED NINE YEARS WITHOUT TREATMENT  IS THAT YOU DON'T MENTION THE WOMEN WHO REFUSED CHEMO AND DIED. I THINK IT IS DANGEROUS TO ONLY GIVE ONE SIDE OF THE STORY TO  OUR TNBC FAMILY. PLEASE TRY TO BALANCE YOUR STATEMENTS WITH OTHER INFORMATION THAT MAY BE PERTINENT. 

MOUNTAIN VIEW WE NEED SCIENTIFIC STUDIES TO VALIDATE STATEMENTS. I TRY MY BEST TO GIVE VARIOUS LINKS AS REFERENCES. AS DOES DONNA, SO THAT OUR FAMILY IS INFORMED WITH BOTH SIDES OF THE STORY.

I HAVE SEEN MANY HUNDREDS OIF CASES LIKE MY DAUGHTER WHO, ONCE THEY GOT THROUGH 3-5 YEARS, WITH NO RECURRENCE ARE DOING VERY WELL, SOME ARE NED, AND LIVING FULL LIVES. PERIODICALLY, THERE ARE THREADS ON THE BOARD ASKING FOR LONG-TERM SURVIVORS TO CHECK BACK IN WITH US. OVERWHELMINGLY, THESE WOMEN HAD HAD CHEMO AND BENEFITED FROM IT.

THERE IS A LARGE UNHEARD FROM AUDIENCE THAT ARE TNBC SURVIVORS. THAT IS UNDERSTANDABLE. MANY WOMEN HAVE TOLD ME "YOU WERE VERY HELPFUL TO ME BUT PLEASE DON'T CALL ME TO SEE HOW I AM DOING. I DON'T WANT TO TALK ABOUT MY CANCER. I JUST WANT TO LIVE MY LIFE AND I KNOW IF I NEED YOUR HELP AGAIN YOU WILL GIVE IT TO ME SEAMLESSLY, RIGHT?" AND MY RESPONSE IS "YOU KNOW I WILL."

I FEEL IT IS VERY IMPORTANT THAT THE WOMEN HERE HAVE HOPE. THERE ARE RESEARCHERS AROUND THE WORLD WORKING ON THE PROBLEMS OUR TNBC FAMILY FACES. I BELIEVE PROGRESS IS BEING MADE ESPECIALLY WITH DEVELOPMENTS LIKE KEYTRUDA + CHEMO AND TRODELVY.

 Again lets all build each other up and support whatever decisions we make regarding this awful diagnosis.  xo 

I AGREE THAT WE SHOULD TRY TO SUPPORT EACH OTHER. SORRY, BUT TELLING US THAT WOMEN SHOULDN'T DO CHEMO IS NOT SUPPORTING EACH OTHER. IT'S DANGEROUS, FROM MY EXPERIENCE. YOUR FRIEND, GOD BLESS HER, WHO IS A NINE YEAR SURVIVOR IS MIRACULOUS BUT EXTREMELY, EXTREMELY RARE, UNFORTUNATELY, FROM MY EXPERIENCE ACTIVELY WORKING AS AN ADVOCATE. PERHAPS YOU DON'T FEEL THAT TREATING TNBC WITHOUT CHEMO IS BETTER THAN CHEMO BUT THE OVERALL IMPRESSION THAT I GOT WAS THAT 
IS HOW YOU FEEL. I UNDERSTAND WHY YOU FEEL THAT WAY BUT NOT DOING CHEMO IS, IN GENERAL, DANGEROUS ADVICE AND CAN DO A MAJOR DISSERVICE TO OUR TNBC FAMILY. 
AS I MENTIONED ABOVE THERE ARE MANY WHO WERE ACTIVE ON THIS FORUM WHO I KNOW ARE DOING WELL BUT WE DON'T HEAR FROM THEM; SO WE DON'T HAVE THE FULL PICTURE. 
IN THE SAME WAY THAT I DON'T WRITE ABOUT ANYONE I AM HELPING, I ALSO DON'T WRITE ABOUT WOMEN WHO CALL ME 5, 10, 15 YEARS AFTER OUR LAST INTERACTION AND I REJOICE WHEN THEY TELL ME HOW WELL THEY ARE DOING. 

I TOTALLY RETURN YOUR xo AND PRAY THAT SOMEHOW, SOMEWAY YOU CAN CATCH A BREAK IN THE NEXT YEARS.

AT THE CORE OF ALL THIS I TRULY BELIEVE I UNDERSTAND YOUR FRUSTRATION AND I SHARE MUCH OF YOUR ANGST. IF I DID NOT RELATE TO WHAT YOU WROTE I WOULD NOT HAVE RESPONDED. I HOPE YOU TAKE MY WORDS AS CARING TOWARDS YOU BECAUSE THEY TRULY ARE.

WITH MY LOVE TO ALL HERE, INCLUDING YOU, MOUNTAIN VIEW,

STEVE




Edited by SagePatientAdvocates - Jul 17 2021 at 8:19am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2021 at 10:52am
We should all be able to share our opinions without judgement.  I don't need scientific studies to know that chemo does not help all those with TNBC and to say it does is not fair either. I personally know 4 people with TN that chemo did not help at all in fact it made things worse and some have already passed away. Now I am watching another friend going through the same thing and she is on her final days.   I am not going to get into any disagreements or arguments with you.  I know there are more than 4 subtypes but they seem to at least acknowledge 4.  I know my subtype and I know chemo does not work for my subtype.   The doctors need to stop treating this like it's all one disease because it's not.  Chemo is standard protocol because they have nothing else to offer.  I met with some top doctors at top cancer hospitals and the answer is always it's protocol.  Anyway I would just like women to stop being scared and bullied into making decisions.  Again, chemo works for some and others it does not.  I have another friend with TN that declined chemo after watching her aunt pass away from it.  She is a 9 year survivor without any chemo.  Again lets all build each other up and support whatever decisions we make regarding this awful diagnosis.  xo 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 10:57pm
Originally posted by whynot whynot wrote:

Hello, I am new to this forum, so forgive me if I'm posting in the wrong area. I was diagnosed with Stage 1 TNBC. I had a double mastectomy and then went to the oncologist and was told that because the tumor was only out of the duct by 6mm I did not need to worry about chemo or any other therapy and come back and see me in 4 months. I am worried that she does not understand the difference between TNBC and other breast cancers and maybe her advise is correct. I thought I would go get a second opinion with someone who specializes in this kind of cancer, but when I looked for a specialist in Denver for TNBC oncologist I cannot find one. Does any one know of someone I could see in the Denver area?


Whynot,

Your tumor size is in that "grey area" for recommending chemo.  Actually the NCCN Guidelines suggest for TNBC:

If tumor is 0.6 to 1.0 cm, consider:Chemotherapy

Please see page 54, Guide 11 of the NCCN Guidelines:



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 10:48pm
Originally posted by Mountain View Mountain View wrote:

Hi!  I would of been happy to find an oncologist that said not to do chemo.  In all my research, there are 4 subtypes of TN and it seems chemo doesn't help them all and seems to make it worse.   I don't want to get in trouble for saying that on here but it seems true.  There is a natural TNBC group on Facebook and a lot of things you can take and try to prevent a reoccurrence.  I opted to try only low dose chemo which I regret as well.  Good luckSmile xo



Mountain View,

There are actually many more than 4 sub-types of TN.  I've done so much research over the past decade and never heard that chemo "makes it worse".  Please provide your scientific sources?  I'd be happy to research it further.

TNBC is not like other breast cancers.  It is much more aggressive and suggesting alternative therapies outside of standard treatment guidelines could be misleading and dangerous.  I'd caution these type of statements if you are not a medical professional. 

For those that would like to understand and read the NCCN Guidelines for Breast Cancer,


Page 54 discusses treatment for TNBC, particularly Guide 11 and Guide 12.




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 7:01pm
thank you cookie54! I agree that this area has its share of wonderful medical care options. I also wish that none of us had to deal with this. Wishing you & everyone here all the best! Sending hugs and good thoughts!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 5:11pm
S_pixiedust I'm so very sorry for your recurrence. I am also dealing with a recurrence and like you was stage I in 2016, now  Stage 3C had mets to axilla and chest wall nodes. 
I live in South Jersey 20 minutes from Philly and had surgery in the Penn system and my treaments are at Penn in NJ. I am sure Steve will point you in the right direction we are lucky to live in an area that has great medical facility options.

Take a breath, one step at a time and you will battle through! I know it stinks and I wish none of us were dealing with this. We are all here for you and wish you all the best.Hug
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Post Options Post Options   Thanks (1) Thanks(1)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 3:46pm
Hi!  I would of been happy to find an oncologist that said not to do chemo.  In all my research, there are 4 subtypes of TN and it seems chemo doesn't help them all and seems to make it worse.   I don't want to get in trouble for saying that on here but it seems true.  There is a natural TNBC group on Facebook and a lot of things you can take and try to prevent a reoccurrence.  I opted to try only low dose chemo which I regret as well.  Good luckSmile xo

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Post Options Post Options   Thanks (0) Thanks(0)   Quote whynot Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 12:08pm
Hello, I am new to this forum, so forgive me if I'm posting in the wrong area. I was diagnosed with Stage 1 TNBC. I had a double mastectomy and then went to the oncologist and was told that because the tumor was only out of the duct by 6mm I did not need to worry about chemo or any other therapy and come back and see me in 4 months. I am worried that she does not understand the difference between TNBC and other breast cancers and maybe her advise is correct. I thought I would go get a second opinion with someone who specializes in this kind of cancer, but when I looked for a specialist in Denver for TNBC oncologist I cannot find one. Does any one know of someone I could see in the Denver area?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 12:48pm
Thank you, Mountain View! I will investigate all options. Trying to stay calm here, and you are all helping me do that! So many good and caring people in the world - my heart is full of gratitude and hope now! Wishing you all the best!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 10:43am
I am sorry you are going through all this. I was diagnosed 2018 with TNBC. I was trying to navigate and decide what to do. I contacted the Cancer Treatment of America in Philadelphia, I live about 2 hours from there but in the end decided not to go there since I didn't want to do standard chemo for TNBC.  In all my research over the years TN has 4 subtypes and 2 seem to respond to chemo and 2 do not. I had my tumor tested by an integrative oncologist by a company called Caris Life Science.  I was lucky enough to see my subtype of TN on that report and that I would not respond to chemo, unfortunately it was after I did  4 weeks of IPT low dose chemo.  My dr. was not upfront about the report.  There are some facebook groups for TN also.  Some are all natural and some are not.  Seems a lot of things are supposed to help weather you do traditional or natural things.  I just found this on youtube recently and he was one of the best at describing the subtypes and things that might help. See if you can pull it up or google it. https://www.youtube.com/watch?v=rYrBgnFrU40&list=PLukQsnpSdOW5oYR9pOqMZXgbOIoGTYDds ; I don't know if the link will work but try looking it up on youtube. Cancer concepts and compliments.  Dr. Belanger Natural Therapies for TN.  Hang in there and I hope you find some help. xo

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Thank you, Donna. I’m already overwhelmed by the kindness in this group. All the best!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 9:36am
S_pixiedust,

Please reach out to Steve.  He is one of the most caring, kind and helpful member who has helped many of us navigate medical professionals in our area and getting second opinions.  I'm so glad to be able to call Steve my friend. 

Wishing you the best as you navigate treatment decisions.  Keep fighting!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 9:29am
Thank you so much for your kindness. I’ve never posted on any type of forum before, so I wasn’t sure if anyone would even notice. I am very grateful for your response and Steve’s response. I hope things go well for you. We’ll both keep fighting!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 10:49pm
Dear S_pixiedust,

I am sorry you have had such a tough journey.

I do know a Breast Medical Oncologist at University of Pennsylvania who is very familiar with TNBC.

Please send me an email to info@sagepatientadvocates.org and I can set-up a Zoom if you
are o.k. doing that. I would prefer that to a phone call but up to you.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Hi S_pixiedust,

I am so sorry you are having to go through this.  Perhaps you can see another doctor in the Philadelphia area to get a second opinion.  Maybe Steve (Sage patient advocate) knows someone in the Philadelphia area that he could recommend.  

I hope things go well for you.  Keep fighting!


DX 1/19, age 48, IMC-38mm, IDC-5.1mm, stage 2, grade 3, 0/2 nodes, BRCA-, AC x4 (2/19), T x3 (4/19), BMX (5/19), T x6 (6/19), T&C x3 (6/19), X (8/19 - 1/20), IMRT Rads x36, K (2/20-1/21), CT NED 6/20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 6:26pm
Hello everyone. I’m new here today and unsure of how to navigate this forum, so please bear with me. I’m desperate for advice. I had TNBC Stage 1, Node Negative in 2016 with lumpectomy followed by 4 doses of Taxotere and Cytoxen and 36 rounds of radiation. Five months ago (Feb 2021) I was diagnosed with mets to bone, lung, and lymph. In the last few months I had 5 radiation treatments and 3 months of Taxol. My PET scan showed some improvement, but some worsened areas in my bones. Can anyone help me please? I’m terrified. I live in the Philadelphia area and don’t know who to turn to for a second opinion. Please help if you can. Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2021 at 12:31pm
Dear littlelady,

So glad you posted on the TNBC Foundation forum. I love this forum because the people here truly care and there is a gentleness about the forum that I find very appealing. I hope, in time, that you feel truly safe and supported here.

Your idea of looking forward not backward is important. I would add "please try to find the beauty in each day." I have been doing that for many decades, since my Mother passed when I was 20 (I am 77 now). Often these days my 'beauty' comes from my grandchildren, especially. There is a purity about their love and the way they express themselves.

One of my grandsons told me something in a factual way the other day that has continued to give me joy a month later. He is almost 6 years old and will be very tall according to his pediatrician. I told him "you know you are going to be taller than Grandpa some day." He proudly said "for sure, Grandpa, I will be taller than you." And then I said "but what if when you are 6'2" and maybe 17 years old, Grandpa might start growing again and you won't catch up to me?" He thought about that for about ten seconds and said to me very seriously (somehow he has now morphed into the grandfather and is talking to ma as if I were his grandson). "Grandpa, that is not going to happen because old people don't grow." And he didn't say it as a wise guy or trying to be funny. He was quite serious and of course, accurate. I cracked up and still chuckle a month later.  

It seems that I have been surrounded by cancer my whole life and especially in the last 17 years since my daughter was diagnosed with TNBC at the age of 36. I have been privileged to help over 1000 people with various cancers during that time and I find that for my own well-being it has been helpful to try to find the beauty in each day. It can be a piece of music, prose, poetry, a movie, the smile of a loved one, or just the presence of a loved one. Or even a Zoom with someone new. I am truly blessed to be a patient advocate and the work fills my heart. 

My experience has been that people with TNBC may have a better quality of life if they can have a positive attitude and try to find the beauty in each day. I know it may be very difficult to do on many days but I would encourage all, here, to please try. 

Little lady you have, movingly, shared with us your two year journey to get to this point and I applaud you for making this first post. I believe that qualifies for the beauty in this day for you because you will be opening a caring world so that you will never "feel alone."

We 'get it' here and whatever you have gone through has been experienced by many and I believe you will see that over time, the folks here will show you that they care. The emotions are authentic and so are the wonderful participants here.

Welcome, little lady!!!!!

with my love to all here,

Steve



I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote littlelady Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2021 at 7:51am
Hello All!

I found this safe place in 2019.  Many thanks to Donna and Steve for answering my endless questions privately and helping me navigate this long process.  While actively undergoing treatment I was so emotionally overwhelmed.  I am just now able to have the courage to introduce myself to this forum.

I was diagnosed in early 2019.  My treatment ended in early 2021.  I am currently dealing with side effects from the 2 years of treatment.

I am learning to focus on and appreciate today.  I am learning to look forward and not look back.

Thank you to all that have shared their knowledge and experiences in this forum so that I do not feel alone to face what the future holds.


Edited by littlelady - May 28 2021 at 7:57am
DX 1/19, age 48, IMC-38mm, IDC-5.1mm, stage 2, grade 3, 0/2 nodes, BRCA-, AC x4 (2/19), T x3 (4/19), BMX (5/19), T x6 (6/19), T&C x3 (6/19), X (8/19 - 1/20), IMRT Rads x36, K (2/20-1/21), CT NED 6/20
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